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Ange’s Story (PCOS)

teal-ribbonMy PCOS Journey

When I was 17, I went to the doctor. I wanted to sort out the migraines and irregular, painful periods that I’d had since 14 and the trail of hair that was appearing under my belly button. I was diagnosed with PCOS. Basically, he said, “You have this disorder. It’s common. Here’s some birth control pills.” No information or advice about diet, lifestyle, or alternative medication. Just the added encouragement of “With the severity of your symptoms, your chances of having kids are about one in a million.” My ultimate dream, that of being a mother, gone in a flash. Bearing children is the most natural thing a woman can do, and I couldn’t even do that right. So what good was I? What’s more, the birth control pills did nothing but make me constantly dizzy and nauseous.

Still, I managed to lead a relatively normal life for a few years, and after I took myself off the pill, I even lost a bit of weight. I had some tough times, like anyone does. PCOS was a big part of some romantic disasters that affected me greatly. There was the guy who used the fact that I was self-conscious about it to emotionally abuse me. You know the type–he goes for the girl with the low self-esteem because he thinks she’ll be easy to control. I was with him for a while. Then there was the guy who was incredibly sweet and head-over-heels in love with me until I broke the news about the infertility. He thought about it, then charitably offered to stay with me, even though I was, in his words, “horribly flawed.” Just what a girl likes to hear.  I preferred the idea of being alone to being his pity project, so I walked away.

I was 23 when somebody close to me passed away. I’m guessing, in hindsight, that the stress spiked my cortisol levels and set off a change in my hormonal profile. The fact that I was living on a student’s diet of apples, toast and vodka probably didn’t help either.

I slowly but surely started to gain weight again. My skin got really bad, with pimples and discolouration everywhere, and I started to notice unwanted hair on my face and body that was growing much thicker than before. To say that I felt like less of a woman is an understatement. I felt like a beast. I had no energy. It was like I had been hit by a train. I stopped menstruating altogether for 6 month bouts. When I did get a period, it would last for two or three weeks. I was in agony and would have to deal with clots almost the size of golf balls.

My mood was all over the place. I plunged into a depression and stayed there. Years of my life disappeared into endless tears, cigarettes and confusion. I have always been the nervous type, but my anxiety spiralled out of control. I was having panic attacks almost daily, just at the prospect of leaving the house. I have a loving family, but I didn’t feel like I could ever make them understand what I was going through. People see PCOS as a non-fatal disorder, and this may be so, but the depression it can trigger is no joke. There were times when I could easily have taken my own life.

Then I changed doctors. My new doctor gave me a little more information about PCOS. Just little inroads, which led to me researching it on my own and understanding it better. He also seemed to be under the impression that I wasn’t completely worthless, as I had come to believe. He let me know that it wasn’t my fault–I didn’t choose to have PCOS. He listened to me, like other doctors before him had not done, and he invested some time into actually doing something proactive about my health. He tried me on different medications and different diets. He encouraged me to make small changes. Very slowly, I came back from the brink.

Eventually, I felt confident enough to make a big change–I stopped smoking. Boy, was it hard. In fact, it was torture, but after a year smoke-free, I started to think to myself, “Wow, I actually did it. I took charge of my own health and did something amazing. Wonder what else I could do?”

Now, a few years later, I’m answering that question. I’ve lost 40kg. I’ve educated myself about my disorder, and the whole ‘knowledge is power’ thing really is true. I’m more confident. I’m still nervous and self-conscious and probably always will be, but there are no more panic attacks. I know my triggers and have strategies in place for when things get really tough because I’ve learned that stress management is a priority when you’re dealing with hormonal issues.

My menstrual cycle is now manageable. I’m in my mid-thirties, and with no guy on the horizon, I’ve pretty much given up any dream of being a mum, but I’ve come to realize that when your dreams get crushed, it makes room for new ones. I’m hoping that one day maybe I can do something that makes the world a better place for other people’s children to grow up in. I’m hoping to reach my goal weight. I’m hoping to return to work sometime soon. I’m hoping to travel one day. That’s the biggest thing I’ve learned, really, is just to hope.

New Zealand
Submitted 09/01/2016

The informational content of this article is intended to convey a personal experience and, because every person’s experience is unique, should not be relied upon as a substitute for professional healthcare advice.

This story is intended to convey a personal experience and, because every person’s experience is unique, should not be relied upon as a substitute for professional healthcare advice.

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One comment

  1. Anonymous

    Hi Ange,
    I’m sorry you’ve had to go through this. My PCOS went undetected for years and it led to endometrial cancer. I was engaged when I found out about the big C and dumped shortly after. I guess he didn’t believe in the “through sickness and in health” part. Finding out I had cancer was bad, but knowing I may never have kids was worse. I was diagnosed in 2007 and I’ve waited for Mr Right to come along since, so maybe I could have my dream family. That hasn’t happened yet, so I decided to take matters into my own hands. I attempted IVF for the first time. So far, so good, but I have to go back for more tests on Tuesday. As my nurse put it, “I’m cautiously optimistic”. I’m praying that God continues to bless me and that the outcome is good. But, time will tell. The one (of many) things I regret is not doing this sooner. I’m 39 and I wish I would have been more proactive. I don’t know if it would have made a difference, but the thoughts of the possibility are there.

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